This Is What It’s Like to Have Celiac Disease, According to a Fitness Competitor

It's so much more than just giving up bread.

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The gluten-free diet is nothing new anymore. Unfortunately, it’s popular due to its marketing as a weight-loss diet instead of the real reason: to help those with celiac disease, which is also nothing new. People still don’t fully realize gluten is simply a protein that acts like a glue in certain wheat, rye, spelt, and barley products. That simple ingredient causes quite severe reactions in people with celiac disease.

Brittany Reilly, a figure competitor and professional photographer, understands the real struggle of having to live a gluten-free life that extends beyond looking for a fix to lose weight. I went ahead and interviewed her to get a more in-depth look at what it’s really like having to live gluten-free.

Photo courtesy of Brittany Reilly

Spoon: What are some common misconceptions people have about living a gluten-free life?

BR: People think gluten is just bread, and that’s what is “evil.” Many don’t realize other foods like soy sauce has gluten it in. Gluten is simply a protein found in wheat. Many assume I eat super clean foods just because I’m gluten free when I can actually eat fried food, chips, cookies, etc. They just all have to be gluten-free, which can be done by using rice flower. My mother makes the most delicious gluten-free chocolate chip cookies!

Domino’s has a gluten free pizza, and while the dough is gluten-free, there’s no way it remains gluten-free since everything is cooked in the same area, on the same pizza trays. Domino’s actually recommends NOT eating the gluten-free pizza if you have celiac disease.

GIF courtesy of giphy.com

Another misconception is that it’s safe to use the same toaster that toast non gluten-free bread. At home I have to have my own toaster, and keep it separate from the one my husband uses to avoid cross-contamination. When I’m not using it, I put it in the cabinet to keep it safe and gluten-free.

Wheat is used as a thickening agent, so almost all soups contain gluten, and most people don’t realize this.

There are many other names you have to look out for if you’re gluten-free: barley, malt, etc.

Spoon: Have there been any ridiculous questions people have asked when you tell people you have celiac disease?

Photo courtesy of memegenerator.net

BR: One is, “You can’t eat anything good!” There are so many amazing gluten-free brands though, and not just the big name ones you see at the grocery store. Instagram is especially awesome for this! Many small businesses that sell trustworthy gluten-free products can be found on Instagram.

Another one is, “I’m sure you cheat every now and then,” but I explain it’s definitely not some diet to lose weight. It’s a rather specific diet I have to eat to control a disease. Many associate celiac to just be stomach issues, but there are over 100 symptoms, with one being neurological issues, which I have. I never, ever eat gluten.

A third one is, “Can’t you just take the bun off?” No, because at this point, the meat or whatever was on the bread or bun touched my food, which can cause a reaction.

Spoon: What are some things you wish restaurant owners would know?

Photo courtesy of Brittany Reilly

BR: Cross-contamination is serious. Whenever I eat out, I always ask to talk to the manager and then the chef who will be making my food. I explain my food cannot come in contact with anything containing gluten. I usually can’t have my food cooked on the grill as they toast bread on it, so I ask my food always be cooked in a pan with fresh utensils. I also ask to have my food be brought out separately from everyone else’s food so nothing can fall on my plate. Some restaurants will label their fries as gluten-free, but they fail to tell you the fryer is used for other foods containing gluten, so the fries aren’t gluten-free anymore.

Getting ice cream is pretty difficult too, and I only eat at places where the ice cream comes out of a machine. At parlors with scoops, the ice cream scoops are usually dipped in any ice cream, and then just placed in water to rinse. At froyo places, most list the flavors that are gluten-free, and then I’ll bring my own toppings that are safe since they usually don’t have many gluten-free toppings, and everything can be cross-contaminated when people are scooping toppings out.

Spoon: Some gluten-free labeled products aren’t entirely gluten-free, correct? Do you have to be extra careful when you buy gluten-free products to make sure they won’t harm you?

Photo courtesy of livememe.com

BR: Yes, these days so many companies are quick to throw on a “gluten-free” label because they want to jump on the fad. There are a few companies who had to recall products actually. One company allowed wheat to infiltrate their factory causing many to get sick. Another company wrote gluten-free on a bag of chips and it wasn’t, and I was actually one of the many that got sick. I always look for certified gluten-free items, and brands where there’s no label stating, “May contain gluten!”

Unfortunately, using natural flavors is a way companies can hide gluten in their products. If it’s a product you think might contain gluten, and it says, “Contains natural flavors,” with no gluten-free label, I would stay away.

Even many chewing gums can contain gluten, which is hidden in the gum base. But they don’t list it containing gluten.

Spoon: Do you find yourself ever frustrated that you do have celiac, or the fact that just going out can be difficult? There’s always that risk factor and it sounds pretty scary to just trust the chefs/managers that they’ll take the extra care to ensure everything is safe for consumption.

Photo courtesy of eat-spin-run-repeat.com

BR: Sometimes I just get sad, like I just want to be a normal person who can eat at a BBQ, go to a restaurant, or eat at fast food places when I’m on the go, and order like a normal person. But I always remind myself so many others have it worse. And if I can control this disease by what I eat, I shouldn’t complain. Trusting restaurants is hard, so we keep to the same places!

Spoon: Were you born with celiac disease?

BR: Yes, but I was misdiagnosedmost my life with another disease.

Spoon: Oh wow. I understand you recently ended up in the hospital too because of cross-contamination. Have there been other instances?

Photo courtesy of Brittany Reilly

BR: Sadly, yes. There’s been more than a handful of times I ended up extremely sick and in the hospital. On top of celiac disease, I also have life threatening food allergies to peanuts, all nuts in general, and shellfish. I carry Epi pens for those. Sometimes I can be sick for more than three solid months until my body gets back to normal. It affects my bones, joints, brain, stomach, ears etc. I’m very selective where I eat out.

Spoon: What are some of your favorite gluten-free products you know are safe to consume?